Tuesday, March 23, 2010

Post replay: A Bill of Rights For Parents of Kids With Special Needs

Hi, peeps. We're on the Disney Wonder right now, so I'm sharing one of my all-time favorite posts, A Bill of Rights For Parents of Kids With Special Needs. If you have any to add on, share!


We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

For a printable copy, e-mail LoveThatMax@gmail.com.

18 comments:

  1. This is my all-time favorite post--thanks for re-posting it.

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  2. I agree, from the extremely older sister and part time care taker of 6 special needs beautiful children I advocate that you publish this bill to help curb some of the ignorance.

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  3. I'm with Katy and everyone else! That Pinot Grigio right is a good one, too, I must say!

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  4. no truer words were spoken!! love love love this post! rings so true to my heart. thank you.
    Kristen

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  5. Love, love, love! Thanks for the re-post.

    Hope you're having a blast at Disney! Say "hi" to Mickey for Amelia -- he's her favorite!

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  6. Wow!! This is amazing!! I LOVE it!! It's all so true, and I think that I have thought every one of them at least a dozen or so times over the past six years since my son was born. Have a great trip...we were on the Wonder in January and had the time of our lives...I am thinking about a post in the near future about how Disney gets it so right for families with special needs children; I would love to hear what you though of it too!

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  7. This fits just as perfectly as it did the first time you posted it.

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  8. Wonderful post! Thinking of you at WallyWorld..can't wait to see the pix!!

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  9. First time reader - a friend sent me the link. I don't see how any parent of a special kid canNOT relate to each of these. Thanks for stating it all so well.

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  10. Is it cool if I post this on my new website? Please contact me if you would prefer I did not. Thanks - well said!

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  11. 100% True!! My favorite is the one about how the doctor's may not always know best. Sometimes they are so far off with what they come up with yet look at the parents as if we're uneducated. I just had this conversation last week. I may not have any letters behind my name, but I live this 24/7. Sometimes, I just might know what I'm talking about!! Love the post once again Ellen. Thanks for always sharing.

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  12. Enjoy Disney!! We are going to Disneyland in June and we are counting the days.
    May I borrow the Bill of Rights and put it in my blog? I would love to post this.

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  13. I LOVE your bill of rights. As a mother of 2 autistic boys I know all to well the feelings & frustrations of dealing with doctors of all kinds, teachers, therapists, those "lovely" insurance battles, and wanting to smack a well meaning mom who brags about her "perfect" child - ugh. I can only pray for forgiveness when I have those feelings, but when I look at my 2 handsome, caring, and wonderful boys those feelings disappear and I give thanks for them. HE gave me these wonderful boys knowing that I was strong enough to handle all that comes along with being the parent of a special needs child. And I am, always have been. It's nice to read that sometimes it's ok to have those feelings, go out with your girlfriends, bawl home from the playground, and to just be able to vent but also to just enjoy our kids for who they are - NOT for the diagnoses they have. Thank you for sharing. Ivy

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  14. Your blog is AMAZING. I'm a special ed teacher and my daughter has a genetic disorder. She's only 4 months old and your blog is SO what I needed today! Can't stop reading!

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  15. And you have the right to post it on the Internet

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  16. I'm not sure I like this bit we have the right to hope for an empty playground so we don’t have to answer the question, “What’s wrong with him?" Ellen I'm sorry we do NOT have that right. Plus completely empty playgrounds are dangerous. I'm not allowed to go to playgrounds which are completely empty. Its a safety thing. Generally speaking you should avoid them. If you are in a deserted playground and a stranger attacks Max, what are you going to do?

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Thanks for sharing!



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